Sunday, June 17, 2018

To create a life that is both satisfying and successful... (Part 1)

“Inclusion is not a place; instead it is a lifestyle in which a person is an active participant in his or her life, rather than a passive observer and recipient of decisions someone else has made. To this end, inclusion promotes quality of life by (a) empowering individuals to have control over their own lives, (b) providing individuals with the opportunity to select the lives of their choosing, and (c)  conferring individuals with the sociopolitical power to defend their choices. Thus, in sum, the conceptual basis of inclusion is to create a life that is both satisfying and successful for a person with a disability.”

It seems like yesterday that my "baby" was sitting through his kindergarten graduation ceremony. At that point it had already become apparent to me that figuring out how to make school work for him was not going to be an easy task; That in the intersection between who he is and what school is his "disability" would be compounded and that through the years I would have to work hard to ensure that he was defined by more than what existed in that intersection.  

I began his education with a a dream of an inclusive and meaningful life with little awareness of how often that dream would be challenged. I knew it was about more than education and ensured that he was involved in gymnastics, soccer, music classes, scouting...etc. In the middle of all these activities we worked hard to find the balance that Mikey required between social interactions and time alone to explore and recharge.  

Through his elementary years it took planning and coordination to ensure he had normative social opportunities including birthday parties and attending his grade 6 camping trip (without his mother tagging along and getting in the way). Clearly, there were girls to be flirted with and squirrels to be chased and nobody needs their mom in the way for that. 

Junior high brought with it a whole new set of challenges and opportunities. Challenges in that there were many who believed the "gap was too big" for him to get anything out of being in a general education classrooms. Being in the general education classroom though is what created both social and academic opportunities - be it exploring the arts, hanging out with friends, contributing to group projects, or becoming completely fascinated with the concept of density. He was also finally able to get a communication devise in his Junior High years which opened new doors both socially and academically. 

High school, like every other part of his education has had it's ups and downs. He has discovered cooking and photography and continues to expand his circle of people. People who would joke with him, shoot baskets with him, and even comfort him when he was upset. These past three years seem to have passed in the blink of an eye. A few weeks back he participated in the school's grad ceremonies and on Wednesday of this upcoming week he will go the school for the last time as a student. It seems a bit surreal at this point that this part of the journey is all but over. 

I have written this post as a "Part 1" to give some context to my next post (which may take a bit of time to put into words). My son's story is not an inclusion story where the student becomes a super star as a result of inclusion. In fact, to those who believe in segregated education his story would be seen as one where others do not believe he came to his full potential through school. It's a debate that matters little to me. It's been hard at times. He has been lonely at times. But there are also so many experiences and learnings that connect into the goal of "creating a life that is both satisfying and successful". Although it is not going to be easy moving forward, we will be able to draw from those experiences to work with him in creating an normative adult life that is driven by him (although, like his education, it might take a lot of much worth-it time and effort and problem solving).  

Stay tuned for Part 2 where I dig a bit deeper into inclusive education, inclusive lives and dreams for adulthood through mommy eyes.